Nairobi - Nominated Kenyan Member of Parliament for Special Interest Groups, Mwaura Isaac, has said that persons with albinism do not require pity or tokenism, but rather implementation of their rights.
Mwaura said that it was the duty of each person living with albinism to claim his or her rightful place in society by challenging the deadly stigma that comes with living with albinism.
Mwaura was speaking to hundreds of members of the Albinism Society of Kenya (ASK) in Nairobi as they celebrated the International Albinism Awareness Day on Monday at the Kenyatta International Conference Centre.
“We must activate our rights as enshrined in the Constitution. Each one of us must challenge the stigma we face,” said Mwaura.
Mwaura is the first person with albinism in Kenya to become a Member of Parliament. He was nominated into the legislature by his party, the Orange Democratic Movement (ODM), in 2013 to represent special interest groups who have been marginalised for years.
He castigated members of society who continually call albinos derogatory names, saying that such names as “zeruzeru” should be banned as they added to the marginalisation albino people already faced.
A judge of the High Court, Justice Mumbi Ngugi, supported Mwaura’s remarks, saying that persons with albinism must demand their rights and not beg for them.
“We are people first. We just happen to have albinism,” said Justice Ngugi as she urged the government to expand its programme to the grassroots where people with albinism desperately needed basic services such as healthcare.
“If we don’t protect the most vulnerable in society, we cannot protect anyone,” said Justice Ngugi, herself a person with albinism.
Although there are no official records of the number of people with albinism in Kenya, one report released in 2014 said estimates run in the tens of thousands.
Speaking to the African News Agency (ANA) at the event, Dr Prabha Choksey, the founder and trustee of the Dr. Choksey Albinism Foundation, said that there was a need to urgently reach out to children in particular with albinism as they were the most vulnerable in the group.
Choksey, who is a world renowned eye specialist, said that provision of appropriate eye glasses and other visual aids before the age of seven could help improve and preserve the sight of children with albinism.
She said: “Contrary to popular myths and misconceptions, people with albinism are not blind and they should not be sent to schools for the blind but should be integrated into regular schools after being provided with the right eye care.”
Choksey said that society must be educated to understand that albinism was not a curse but a defect in skin pigmentation.
“Albinism is a genetic condition characterised by lack of pigment Melanin in the skin, hair and eyes,” said Choksey, adding that the Melanin pigment helps absorb ultra violet radiation from the sun.
She said a lack of melanin in the skin and hair made persons with albinism appear light skinned and with blond hair.
“Prolonged exposure to direct sunlight without skin protection can lead to the development of skin cancer which if left untreated can be fatal,” said Choksey.
The Permanent Secretary of Ministry of Social Support Susan Mwachache said that the government had set aside Ksh 100 million in support of programmes to empower and protect persons with albinism.
Mwachache said that Kenya had taken policy and legislative steps to improve the lives of PWA, including proactive actions such as the provision of free sunscreen lotions, hats and protective clothing, as well as offering eye solutions.
She said that an affirmative action programme in the public service of employing at least five percent of PWA was wanting, as was affirmative action in giving opportunity to PWA in government procurement tenders.
She said the government was concerned about the continued attacks on PWA and urged citizens to treat them with respect.
A report titled “The human rights of persons with albinism in Kenya” released by a consortium of four NGOs noted that: “Persons with albinism in the country continue to suffer from stigma and discrimination particularly in the education system where they are often mocked for their appearance and their low vision remains unaccommodated.
“The result causes a high dropout rate amongst PWA. This, in turn, leaves most of them unskilled and unequipped for jobs and relegates them to menial jobs, including jobs that expose them to the sun and subsequently to skin cancer which is the primary killer of persons with albinism in the region of Sub Saharan Africa.”
On affirmative action, the report noted that the constitution of Kenya provided that at least 5% of members of elected and appointed bodies should be persons with disabilities.
“This has led to the appointment of a few high profile PWA including one Member of Parliament, Hon Isaac Mwaura, one judge of the high court, Madam Justice Mumbi Ngugi, and two county assembly representatives,” said the report.
The United Nations, in marking the day, said that in some communities, erroneous beliefs and myths, heavily influenced by superstition, put the security and lives of persons with albinism at constant risk.
The UN said that on 18 December 2014, the General Assembly adopted a resolution proclaiming, with effect from 2015, 13 June as International Albinism Awareness Day.
– African News Agency